Posted on by littlemisstwitch · 1 Comment

A Few Flowers and the Lessons of RA

A few days ago I got to work in my yard and plant some flowers. I know, big deal-people play in their yards all the time. And we all have that friend on social media who posts their latest feats of gardening that would make even Martha Stewart jealous. So what, you ask, is so “blog worthy” about ME planting a FEW flowers?

Flashback roughly 30 years. I’m sitting in Mrs. Montgomery’s 6th grade class doing math and wondering what’s for lunch, when out of the blue I notice my middle and ring fingers on my right hand start to hurt. Thinking I was just pressing too hard on my pencil I eased up and kept writing. It was to no avail though–the pain continued. I muddled past it and was happy when the school day was over. The pain continued for a few days and then my fingers started to swell as well. So I told my parents and they took me to the doctor. After a thorough exam, I received a diagnosis that no 12 year old should have to hear. Juvenile Rheumatoid Arthritis (JRA).

In the late 80s, when heart disease and cancer were the kingpins of diseases, Rheumatoid Arthritis (RA) was but a speck of dust on the medical research radar. Back then arthritis was what old people got because their joints were worn out, and to try and argue that RA was actually a “disease” was a pointless endeavor and waste of conversation. Even worse, to say that a child could have arthritis seemed quite silly to most, so you can imagine the thoughts that went through my family’s head when they heard my diagnosis. I was sent to a specialist who, after lots of tests and exams, confirmed that I had JRA. My family was given as much information as possible about treatment and care and I was given medicine for the pain. We went home and I began my new life as a kid with a chronic disease.

I was fine for a bit, but between the ages of 12 and 19, my JRA moved from 2 fingers to almost every joint in my body. I was able to work and go to college (albeit it in constant pain), but because there were not a lot of meds out to treat or slow the progression of RA, I suffered joint damage. At 19 I was told that if I wanted a family I would need to start soon, as RA (Oh yeah some kids “grow” out of JRA and recover–I did not and moved on to full fledged RA.) affects all parts of the body, including fertility. I would also need to make sure that I chose a career that used my brain instead of my body because I would probably be in a wheelchair by the time I was 30. Words every 19 year old in their 2nd year of college wants to hear, right?

OK, enough back story for now. Long story short, it’s 30 years later and I’m still kicking. Well, maybe not kicking, but definitely giving RA a run for its money. RA has affected every aspect of my life– physically, emotionally, and spiritually. I can no longer do the things I could do even just a few years ago. Exhaustion is a constant companion and I idle at pain level 6–I’ve gotten used to it though, and count my blessings that I can still work part time and take care of my family.

5 years ago I could have worked in my yard from sun up till sun down doing all sorts of strenuous work. These days working outside for just a couple of hours and planting a few flowers in containers sets me back for several days. So being able to work outside the other day was a blessing. I wasn’t able to do much and believe me, I was in pain later, but I can say that for a few short hours, I was able to enjoy a normal life. For a few short hours I was reminded of what life used to be like and how good it felt to work hard and get dirty.

Rheumatoid Arthritis is a nasty disease that I wouldn’t wish on anyone. It takes your hopes and dreams while mangling your body and depriving you of a normal life. I hate it. I hate that I have it. I hate that there is a chance that I have passed it on to my own children or future grandchildren. I hate being so fragile sometimes and having to ask for help. Despite all this hate, RA has taught me some valuable lessons–the best being to take advantage of every day I am given.

The other day I woke up pain free and I planted flowers. It was glorious. I came back inside exhausted, filthy and happy. After taking a shower (and pain medicine for the inevitable bite that RA would give me), I went back outside and took pictures of those flowers. Later that evening, I posted those pictures on my social media with the happy proclamation that I was “able to do some gardening today.”

I hate RA. But I love that it forces me to appreciate the little things in life…like flowers.

Wanna know more about RA? https://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/

 

 

 

 

 

 

 

 

Posted on by littlemisstwitch

The Awkward Sleeve Ballet; aka Getting Dressed with Tourette’s

via Daily Prompt: Sleeve

When you have Tourette Syndrome, the simple act of getting dressed can turn into a badly performed ballet.

Take for instance the sleeve of a shirt. The sleeve, you see, has to be “just right” or else the tics become non-stop to the point where you are ripping off the shirt. Many a day has been ruined (and many a shirt) because the tics were so bad that I had to change clothes 10 times or more.

This is my struggle. Every day I battle with “the sleeve,” and almost every day the sleeve wins. The minute the shirt does not cling the right way or scrunches up too tightly on my arm my tics go into overdrive making me look like a crazy chicken. Other pieces of clothing need to be just right as well, but it is that stupid sleeve that causes me the most grief. On most days the clothes win and I end up wearing a t-shirt and blue jeans.

I would like to one day know what it feels like to grab a shirt, put it on, and call it good. But since this is not in my foreseeable future, I will continue “the awkward ballet” every morning with my constant and never changing dance partner–Tourette Syndrome.

Want to know more about Tourette Syndrome? https://www.tourette.org/

<a href="https://dailypost.wordpress.com/prompts/sleeve/">Sleeve</a>

Posted on by littlemisstwitch

To-Do Lists

I grew up in the dinosaur age of organization; there were no computers, PDAs, fancy apps or personal assistants like Siri to keep us on schedule and tidy. Sad to say, we had two options: an excellent memory, or pencil and paper. My mother (the quintessential queen of orderliness) was a fan of the latter method of keeping her bills under control and her home tidy, and despite my inexhaustible efforts at fighting this method during childhood, I now cling to it for my very existence today.

You will find no to-do list on my phone or computer, nor will you find my daily schedule on Outlook. Every single thing I want or need to do is written down on paper–the old school way. It is not only my preferred way of running my life, it is the one way I can keep myself truly sane in a world gone mad with allowing artificial intelligence to guide us. Another way to look at this is that I have serious control issues and do not fully trust computers. (We can touch base on that another time.)

Yet, one would think that with all the to-do lists and the “obvious” organization that they must bring, I would feel relaxed and calm. Nope. Not…even…close. I am a constant anxiety ridden stress bunny who determines whether or not the day was successful by how many “things” got crossed off my list. Any less than 70% and I must have been lazy–how dare I be so lackadaisical with my time? Or at least that’s how I used to be…

Frank Sonneberg once said, “Checking items off a to-do list doesn’t determine progress; focusing on your priorities is what counts.” Reflecting on this lately has made me re-think my good-ole to-do list and re-evaluate what I am actually doing with my time. What have I been doing that is getting in the way of scrubbing the floor, washing cabinets and pulling weeds? Examining further I found that I was actually doing things like: cooking a homemade meal for my family, talking to my son about his school day, spending time with my husband and–wait for it–relaxing. What? Relaxing? Spending time with my family? Cooking? How dare I do such things instead of checking things off that list! The list is important. The list keeps us organized. The list makes our house perfectly clean and presentable. The list is precious. (All spoken in the accent of Smeagol from “The Lord of the Rings.)

Nope. The list is a lie–at least in its current format. What I am beginning to learn is that the list, while necessary to actually remind me of what I need to do, can also serve as a task master that keeps me from my emotional and spiritual priorities. The only things I have ever put on my lists were physical tasks, quite literally things “to-do.” There were never things like “cook dinner, read a book or spend time with family” on them.

WHY NOT? Are those things not important–are those things not my priorities? Certainly not, but in a day and age where we schedule everything and everyone, we really should take the time to appreciate what we have accomplished. So in my efforts to correct the “feeling lazy” syndrome that I feel when I see an incomplete to-do list, I now have a “Completed” list. Here’s how it works:

When I write a to-do list, I write on the left column of my paper with the proper “TO_DO” heading. Then on the right I have a second column labeled “Completed.” Then I go about my day diligently crossing things off the left side. At the end of the day I re-visit the list and just when I feel my chest tighten and my brain start to call me lazy I grab a pen and write down everything else I did that day. My friends, this is when I have my “come to Jesus moment” and realize that I was not lazy at all. What I always end up seeing is that while I may not have gotten my house spic and span clean or my papers filed from 10 million eons ago, I did manage to make my mark on this world. I notice that I actually did things that people will remember 10 years from now: my son will never remember how clean the kitchen was but he will remember the conversations we had at dinner. My husband won’t recall how organized the pantry was but he will remember that I spent time rubbing his shoulders while watching TV. I will forget about the books strewn across the floor but I will absolutely remember how every character in those books made me feel.

Balance. It is all about balance. You will never find me ditch my precious to-do lists, but from now on you will definitely find that my lists now have more depth and meaning to them. Life is about living and loving–not just about DOing. I encourage all of you rethink your lists–adding yourself and your loved ones to them.

(Whew…there’s one more thing checked off my to-do list 😀 )

Posted on by littlemisstwitch

A Journey Begins

The Chinese philosopher Lao Tzu once said, “The journey of a thousand miles begins with one step.” What he failed to mention, however, was how difficult that first step could be. We’ve all been there–knowing where we want to go and how to reach our destination, yet petrified by the thought that once we start there may be no turning back. There is something to be said for the familiarity of complacency- it keeps us emotionally safe and does not hold us accountable for failure. Then again, there is always that looming “what if” game that plays in the mind–it keeps us awake at night and gnaws at us during our boring daily routines.

This is where I am tonight. I stand at the precipice between the safety of routine and the fear of failure. I see where I want to go and I have the road map in my head, but putting that figurative “first foot forward” is quite literally numbing.

Writing. Simple, honest, writing. I want to write what I know, what I learn, what I see and how I feel. I want to share this with the world in the hopes that someone may be inspired by my journey and take their own first step. I want to do this…I need to do this. I need to prove to myself that there is more to life than simple working and paying bills. God gave me the gift of words and I need to make good on that and just…get…writing.

I hope that you join me on this journey–or at least drop in every now and then to say hello.

So there you have it. One step. Many more to go. Let’s see where this journey will go.